Living Life One Extension at a Time - Extension One Part 4

One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.

The Day I Did Something That Never Would Have Happened Before Cancer

My family and I were involved in fundraising in 2020 and 2021 for a large national prostate cancer nonprofit. We hit the ground running early in 2020 despite Covid. During that time the place I got my haircut was shutdown and my hair was getting longer than usual. I was still working out and one day after a good workout on the treadmill I walked into the bathroom and ran my fingers up through my sweaty hair leaving it all standing up. Perfect time for a stupid post. My post said my hair is protesting this Covid lockdown. One of my loving daughters replied back, "Dad you need a mohawk". Then the two of them decided they would give me a fundraising challenge. If they raised enough money I would get a mohawk. Negotiations ensued and we decided if they raised $500 that each of them would put in $250 for a total of $1000, I agreed. This was posted on a Monday night and immediately a friend of my oldest daughter threw in $500! Hang on a minute, it can't get by that easy. We moved it up to $1500. That came about by Thursday I believe. So having fun with this I told them raise $2000 and my moustache would come off. Now you need to know I have not been clean shaven since I was allowed to regrow my moustache after Navy boot camp in 1982. They'd had never seen me clean shaven. By Sunday they had raised over $2500 and on that day my oldest daughter Bonnie shave my head into a full mohawk and my other daughter Becky shaved my moustache off live on Facebook. What a day! No one including myself thought it would last but I gained so much attention from it I decided to make it my signature. Now it's not a full mohawk and I only do it for events and every appointment I go to, but I still put it on.

The Fall

My very first PSA test was four days after diagnosis and it was 280. My biopsy said it was 294. Under four is considered normal without prostate cancer. The hormone therapy did its job, one month later I dropped to 14.2. The following month 1.35. This trend continued all the way to June 2020 when it reached 0.01. My thoughts were I've got this whipped! Now we just need to stay here. Life was good.

The Rise

The next PSA test was in August, it was 0.02. No big deal, it's finding a place to settle into. I went back to monthly tests, September 0.06, October 0.26. This is starting to worry me. My PA that I am now working with said I met the requirements for Provenge Immunotherapy and we decided to do it. The three treatments for that were in November and December. This would help boost my immune system but not necessarily do anything with the PSA. We also discussed what to do if the PSA continues to rise. One more thing to check, a genetic test to see if I had the BRCA genes. This was important for two reasons. First if I had it, there were other treatments available and second, if I did my daughters would need to be checked since it could cause a higher risk of cancer for them. Well no BRCA genes.

The End of One

The next three months would seal the end of my first life extension, November 0.39, December 0.96 and January 3.25. Now was the time to make the change we discussed a few months before. I would change from Zytiga to Xtandi. Twenty months for extension one. This really didn't hit me as my first life extension was over. That would come much later.

#prostatecancer

#prostatecancersupport

#prostatecancerblog

#mohawkmission

Living Life One Extension at a Time - Extension One Part 3

One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.

Purpose?

I'm going to backtrack just a bit, in December 2020 I had a feeling God was asking me, "Now that you have this cancer, what are you going to do with it?". Not what are you going to do about it, but with it. That is when I decided my purpose with whatever time I may have left was to work to prevent as many men as possible from ending up being initially diagnosed stage four. To get them checked so that early detection would save their life. Early detection results in a greater than 99% five year survival. Find it how I did and you end with a 30% five year survival. My life changed at this point, I had a purpose in my life bigger than me.

How do You Fulfill Such a Purpose?

I was already pretty comfortable telling my story. I would lay in bed at night and think about talking in front of large groups of people. At first it was men, they need to know. Covid quickly stopped all dreams of being able to do this. I kept thinking that surely this would be over soon and I could get back to trying to find groups to talk to. Around the first of September of 2020 I decided to form the Mohawk Mission, a social media based platform to spread awareness about prostate cancer since I couldn't see groups. I open a Facebook page, Instagram page and started a website. It was a meager at best attempt to get the word out but I had started a path that would grow.

Why Men?

I don't recall when this thought first hit me. How many men would I be able to find that want to listen to a guy talk about their prostate and cancer. Let's just say that I wouldn't have attended! I was the guy that didn't care for doctors, there's nothing wrong with me, I'm okay, I feel fine. Didn't know anything about prostate cancer before diagnosis. Never had a PSA test. I knew I wasn't the only man like that out there, and probably a majority men were the same. After all, we're men! No, this needed a different approach. Women are accustomed to seeing doctors from a young age and are generally the Health CEO's of their families. I needed to reach women, they could help get men to the doctors. So my thoughts changed and I started targeting women more.

500 Women

You never know what direction you may be lead. Spring of this year (2022) I had an appointment at the neurological institute for a problem I was having with vertigo. We talked with the nurse practitioner that saw me at the end of the appointment about my cancer. She told me about a group of women that gather every summer for a day of fun and fundraising. I did some research and found the woman that created this event. I would learn that they raise over $20,000 a year for a prostate cancer nonprofit and have several hundred women attend who do a float trip down a local river. I was asked to talk at this event with over 500 woman attending. This would be the pinnacle of my speaking engagements, getting to joke about the hot flashes and the table with stirrups, but then challenging them to get their men checked for prostate cancer. This will be a day I will never forget.

#prostatecancer

#prostatecancersupport

#prostatecancerblog

#mohawkmission

Living Life One Extension at a Time - Extension One Part 2

One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.

Time for My Second Radiation Treatment

I believe it was in September 2019 that my radiation oncologist told me he would like to radiate my prostate since it was my largest tumor in my body. The preparations needed for this radiation provided some entertainment after the fact. They needed to put two gold markers into my prostate so that they could be used to target the tumor precisely. I also had SpaceOar Gel put in. This is a gel that separates the prostate from the rectum to help minimize radiation exposure to the rectum. This was all done in one appointment. I went to my urology clinic and was taken to an exam room so I could get naked and put on one of those lovely gowns. You know, the kind your butt hangs out of. Then they took me into the procedure room, I had no idea what to expect. When I walked in, there was a table to my right, with stirrups on it! My first thought was I was in the wrong room, not pregnant, what the hell was this for. Well, get up on the table, feet into the stirrups and slide your butt all the way to the end of table. There went all my modesty! And what did Beth say again, now you know what it's like. If that wasn't enough, I had to have a CT simulation also before the start of radiation. The rule when you do this and all your radiation treatments to the prostate is you have to have a full bladder. On the day of the simulation I must have over studied. My bladder was at the burst level by the time we got to the clinic. My lead radiation tech comes out and gets me and on the way back she tells me the radiation oncologist needs to talk to me. I'm thinking let's just get this over! The doctor tells me, oh by the way they will be giving me a catheter. I've never had a catheter and now a couple of young ladies will be doing my first. I'm also thinking I'm not responsible for what happens when you tap my bladder, it's at redline pressure. Well they only went up to the bladder so they could put a dye inside the urethra so it could be seen in the scan. The scan didn't take long and I'm ready to go to the bathroom. Wait, don't move we need to give you your tattoos. What, I was in the Navy for seven years and never got one. They gave me three little x's, one on each side and one on top. These would be used to initially line me up in the radiation machine. Now you can go to the bathroom. The treatments were uneventful, 5 days a week for four weeks. My last treatment was the day before Halloween. The lead tech enjoyed decorating for Halloween as you can see by the radiation machine becoming a monster for Halloween.

The Realization and the Goal

During my prostate radiation I had a discussion with the nurse practitioner that took care of all the advanced cancer patients. I asked what to expect in my future, she told me that the hormone therapy generally works for 18-24 months and then I would need go onto something else. This is when I realized that this is no sprint, it's a marathon. I decided I needed a goal, something I've never done before and something that would be hard to achieve. Four weeks after diagnosis there was a 5k run/walk held at my urology clinic. Beth and I decided to attend and so did Bonnie, our oldest daughter. Bonnie and I did the one mile walk. I decided to do some fundraising for the event and my radiology team asked me to be on their team. Surprisingly I ended up being the top individual fundraiser. This brings me to the goal. May 30th 2020 would be the next run/walk and I decided I would RUN it. Now I've never been a runner, never liked running and thought everyone that did it was nuts. But I thought what the hell I'm a 58 year old, out of shape, stage four prostate cancer patient, this should be easy.

Let the Training Begin and the First 5k

I decided to start training for the 5k in December. I found an app that fit me perfectly, it was "Couch Potato to 5k". That described my situation pretty well. This app has you enter data about yourself to estimate how much time it should take you to reach a 5k and customize your training schedule. It said eight weeks for me. I thought I would be conservative and give myself three months to complete it and then I would have three months to improve my time. That thought completely fell through! It took me two weeks to just get through week one. By the end of December I felt like I wasn't getting any where with the app so I changed to walking on the treadmill everyday. At first it was less than two miles at a medium pace. Eventually I made the 5k distance at this pace. Then I started slowly increasing the pace. I spent 30 out of 31 day in January on the treadmill. To cut to the chase, it took me all six months to get to being able to run a 5k. As you know Covid hit and run/walk did not occur but on May 30th my daughter Becky and her husband came up to our little town and the three of us did a 5k around town. This was my first full 5k run, my goal was to do it in 37 minutes. I made it happen in 36:59!

#prostatecancer

#prostatecancersupport

#prostatecancerblog

#mohawkmission